Giwice Position Statment

Gliwice Position Statement on Endocrine Cancer

European Taskforce on Endocrine Cancer
1Clara Alvarez, 2Wiebke Arlt, 3Tomasz Bednarczuk, 4Felix Beuschlein, 5Justo Castano, 6Rossella Elisei, 7Martin Fassnacht, 8Ulla Feldt-Rasmussen, 9Dagmar Fuehrer-Sakel, 10Oliver Gimm, 11Wouter de Herder, 12Barbara Jarzab, 13Beata Kos-Kudla, 14Markus Luster, 15Kate Newbold, 16Christine Spitzweg

for the

European Society of Endocrinology (ESE)
European Network for the Study of Adrenal Tumours (ENSAT)
European Thyroid Association Cancer Research Network (ETA-CRN)
European Neuroendocrine Tumour Society (ENETS)
European Association for Nuclear Medicine (EANM)
European Society of Endocrine Surgeons (ESES)
European Neuroendocrine Association (ENEA)

Affiliations
1 University of Santiago de Compostela, Spain, 2 University of Birmingham, UK, 3 Medical University of Warsaw, Poland, 4 Ludwig-Maximilian University of Munich, Germany, 5 University of Cordoba, Spain, 6 University of Pisa, Italy, 7 Hospital of the University of Munich, Germany, 8 Copenhagen University Hospital, Denmark, 9 University Hospital, Essen, Germany, 10 Linköping University, Sweden, 11 Erasmus MC, Rotterdam, The Netherlands, 12 MSC Memorial Cancer Center and Institute of Oncology, Gliwice Branch, Gliwice, Poland, 13 Medical University of Silesia, Katowice, Poland, 14 Universitätsklinikum Gießen und Marburg, Germany, 15 The Royal Marsden Hospital, London, UK, 16 Ludwig-Maximilians University, Munich, Germany

Definition
Endocrine cancers are defined here as malignant tumours arising from endocrine organs including thyroid, adrenal, parathyroid, pituitary, as well as neuroendocrine tumours in general.

Endocrine cancers involve rare cancers. Rare cancers are generally classified
in the group of rare diseases, which is defined in the European Union as diseases with a prevalence of fewer than 5 cases out of a population of 10,000. One, 3
and 5-year relative survival of some rare endocrine cancers, diagnosed in 1995-1999 was 68%, 52% and 47%, whereas in common cancers 80%, 69% and 65%, respectively. Thus, multidisciplinary care in the treatment of these cancers with a strong background in Internal Medicine, Oncology and Endocrinology is crucial for improvement in diagnosis, treatment planning, survival, both patient and clinician satisfaction and also financial efficiency. Multidisciplinary care may and should improve research in rare tumors leading to increase in treatment options for patients. Moreover, not only physicians, but also allied health professionals are critical in optimal oncological care: specialist nurses, speech and language therapists, dietitians, physiotherapists and occupational therapists. The evidences supporting the idea of multidisciplinary care for endocrine cancer patients have been published within the last years. Median survival was 112 months versus 32 months for patients with neuroendocrine neoplasms treated within specialist unit over those who were not [Townsend, J Clinical Gastroenterology, 2010]. Another study, evaluating patients with other rare disease – soft tissue sarcoma, found the treatment at high-volume center was associated with a significantly longer median survival and was an independent predictor of improved survival [Gutierrer, Ann Surg, 2007]. Multidisciplinary care was also associated with increased recruitment rates in clinical trials [Magee, Clin Oncol, 2001;Masled-Prothero, Eur J Cancer Care, 2006].

The need for a position statement

Even though today many patients with endocrine cancers are referred to specialized centers, there are still no explicit European legal conditions or clear directions. Therefore, our Statement is devoted to pay the attention to this important problem as well as to raise the necessity to solve it. Thus, in our opinion, to create a legal basis for multidisciplinary care of endocrine cancer may substantially improve the diagnostics and treatment of these patients. It would also facilitate to carry out common research projects and to share experiences to create new diagnostic and treatment tools and finally to achieve better outcomes – longer survival.

Position Statement

1 Clinical Management by Specialist Centres
All patients with endocrine cancer should be treated in centres experienced in the management of their condition.
All endocrine cancer specialized centres should make publicly available the number of patients treated and currently monitored for each of the endocrine cancer type they are looking after, to enable patients and referring colleagues to make appropriate choices.
Centres should only consider themselves as specialist if they have seen a significant number of endocrine cancer patients, this number will vary according to the prevalence and incidence of the various cancer subtypes and according to various conditions in different European countries.
It is advisable for European endocrine cancer specialist to achieve certification of appropriately qualified specialist centre for all of endocrine cancer or specific subtypes, as already implements for neuroendocrine tumours by the European Neuroendocrine Tumour Society (ENETS).

2 Comprehensive assessment by a multidisciplinary team
All expert centres should offer assessment and management of the patient by
a multi-disciplinary specialist team.

  • The multidisciplinary team should comprise of
  • Endocrinologists (obligatory)
  • Oncologists (obligatory)
  • Surgeons (obligatory
  • Radiologists
  • Nuclear Medicine Specialists
  • Pathologists
  • Radiation Oncologists
  • Specialist Nurses
  • Gastroenterologists (for GEP-NET)
  • Respiratory Medicine Specialist (for lung NETs)
  • Molecular biologists
  • Geneticists

Based on cancer type, history of disease, the attending physician usually an Endocrinologist or Oncologist. The Multidisciplinary Team may be established in one Institution or in closely collaborating Institutions. Endocrine surgeons are comprehensively trained to address all endocrine cancer types outside the pituitary. However, a number of subtypes are addressed by other specialist surgeons such as neurosurgeons, ENT surgeons, cardiothoracic surgeons, abdominal surgeons, urological and gynaecological surgeons.

We call on all national endocrine associations to prepare and announce applicable analysis and address local authorities to regulate competences
of respective expert centres to guide local treatment of patients according
to recommendations of expert body with multidisciplinary competences. Below we propose the output pattern of information to facilitate European cooperation on this idea.

Endocrine Cancer

Subtype

Incidence

Number of patient cared for annually *

Average number
of surgeries carried out annually - organ (cancer and/or benign tumor) *

Average number of advanced cases to be treated with TKI

Adrenal

Adrenocortical carcinoma

 

 

 

 

Adrenal

Malignant Phaeochromocytoma

 

 

 

 

Thyroid

Papillary and follicular carcinoma

 

 

 

 

 

Differentiated -radioiodine-refractory

 

 

 

 

Thyroid

medullary

 

 

 

 

Thyroid

Poorly differentiated

 

 

 

 

Thyroid

anaplastic

 

 

 

 

Parathyroid

carcinoma

 

 

 

 

Pituitary

carcinoma

 

 

 

 

Neuroendocrine

GEP-NET (well differentiated/poorly differentiated)

 

 

 

 

Neuroendocrine

Lung (typical carcinoid/atypical carcinoid)

 

 

 

 

Neuroendocrine

other

 

 

 

 

3 Participation in Research
All patients with endocrine cancer should have the opportunity to participate in clinical and translational research into their condition. At least, this should consist of a prospective registry associated with a biobanking strategy and ideally all patients should receive information on ongoing and imminent clinical diagnostic or interventional trials relevant to their condition.

4 Specialist Training
Endocrine oncology should form a distinct part of the curriculum for the training of all specialists listed as participants of the multidisciplinary team that manages endocrine cancer patients.